About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, December 23, 2012

Merry Christmas Everyone! How are you? We're doing ok. Unfortunately, lately, we've been under the weather, but we might be on the upswing!
First let me start by saying that Mark and I celebrated 20 years of marriage on the 19th of December! It does not feel like 20 years, it feels like only a few! We waited 16 years to "have children" and Hanz is 4 and Bella is 2!

The day after Celia and I got back from my last procedure, I was pumped on so many steroids (although still very swollen) when Mark and I took the kiddos to Petsmart to get a photo with Santa Claus! It's become a tradition every year - the first year Hanz was in the photo alone because Bella hadn't been born yet! It's cute to look back @ Bella's first Santa photo, when she used to let me put bows in her hair! Now she'll just shake them off! Actually, Mark took this photo and we liked it better than the one we got from Petsmart!

Several days ago I had told Mark that I had been gritting my teeth alot and my jaw line on the left was starting to hurt! I kept having to make the effort to not do that - I think the steroids I was on for the swelling after an embolization were catching up with me! I tend to not go to bed until 2:00 a.m. and wake up @ 4:00 a.m., then get up to get ready for work @ 6:25 a.m. I was tense, exhausted and had a major headache Thursday afternoon. I kept wanting to tough it out and stay @ work, but my headache got so bad, I felt like throwing up! I sent my supervisor an e-mail that I was leaving and ran into her @ the front desk on my way out. I had already started heading to the car when I realized I hadn't clocked out, so had to go back in again! I told my supervisor that I hoped to see her the following day. Well, unfortunately later that night, I did throw up and ended up spending the night where I fell asleep on the couch! When I woke up, I asked Mark if he was going to go to bed or stay on the couch - and he pointed out that it was already 6:30 in the morning! Yikes! I felt horrible, I knew there was no way I could make it to work. To boot - we had people coming over to install a new heater/airconditioner unit, so Mark knew I couldn't stay home. It was a little cold out and Mark knew the workmen would be in and out of the house all day! Called Mom and she came to get me so I could rest @ her house! She and Vicente both had a chiropractor appt., so I just sat in a big comfy chair in their living room with my feet up and dozed off a while! Mark had been massaging my neck before I left, so I was starting to feel a little better, once I did some more stretching and resting! Took an antibiotic, a steroid and a Lortab! When I called my supervisor to tell her I wasn't coming in, she said I sounded terrible! Then I completely forgot I had a wound care appt. that morning and didn't call them until about 11:00 a.m. to explain what happened! They know that when I miss an appt., it's because something major happened like I had a bleed or got sick, or was in the hospital! Last year I admitted myself to the hospital Christmas Eve night because I was feeling lousy! Turns out my blood count was low and I was dehydrated. Mark kept thinking I was going to have to be hospitalized again for IV antibiotics and I thought I had another pseudomonous infection because of the pain I was feeling! I started feeling better mid-morning, so I'm thinking it was exhaustion and tension combined giving me such a horrible headache! I know my sister Celia suffers from migrains and understands how painful they can be!
Mark started feeling under the weather as well, so he went to bed early! Actually, he's been in bed most of the day! He is all sinusy and congested, so he's been taking Musinex and Robutussin cough syrup.
I'm very surprised that I was able to get some Christmas cards out this year! Last year I was too sick to be out shopping @ all, much less sending out cards! This year I managed to do a little more, but we're still waiting to see how Mark is going to feel!

Got up early, even though again, I went to bed @ 2, woke up @ 4, etc. Had to brush my teeth and that's another ordeal. I end up getting the front of my pajamas all wet. I have to drink from one glass and spit out into another since I shouldn't bend over the sink and possibly cause a bleed. I use a "dry mouth" toothpaste and mouthwash Celia recommended that helps - otherwise, even the kiddy toothpaste was almost too strong for me. I have cuts inside my mouth and that stings if I rinse with anything stronger! Since I've had that tension headache I haven't worked with my Therabite lately, so I need to get to that again. Very hard to get way in the back to brush and I'm having some dental problems. I can't imagine having the luxury one day of being able to brush normally and not worry about a bleed!

Let me include a couple more photos of my darling furry children and I'll try and add some photos of our anniversary later! Take care everyone - we appreciate all your love, prayer and support! I've made a big turn around thanks to my sister Celia. For some reason, it finally clicked when we were talking the other day about my having a bleed. I allowed that to shut me completely down and I would vegg. on the couch all weekend. I know she's seen me having a bleed and completely understands what I go through, but she gently reminded me that I always do survive each bleed, so maybe I shouldn't let it get to me so much. She is completely right! I can't let that define me! I can't let that run my life and live in fear of the next bleed! If it happens, then I just have to deal with it and move on forward with my day!
Your prayer gives me the strength to deal with everything this avm throws @ me - thank you for taking this journey with us! I'll blog more soon!
Love,

Cyndi

P.S. Isn't this a darling puppy? Mark and I stopped @ one of my favorite stores on the way home from work and Bonnie was with her mommy shopping @ Gatherings! Here's another cute "dog" I saw on the counter @ Gatherings! Oh, and look @ my Moms beautiful orchid cactus! Then I had to include this cute photo of a Brussels wearing a sweater that I saw in a dog magazine!

Monday, December 10, 2012

Hi again! How is everyone? Ready for the holidays? Well, Celia and I just got back from CO from my having another embolization done @ Swedish. But before I start talking about that, let me show you a photo of me with one of the wound care techs @ Dr.'s Regional hospital where I go twice a week! Her name (nickname) is Miro and she is a doll! We live a few blocks from the hospital, so I go to wound care, then on to work on some mornings! There have been times I don't feel well or up to dealing with avm issues, and it's people like Miro that help lift me up! She is spiritual, kind and always has a hug for me! She knows how much I love our furry kids, so she lent me a book about a dog and also got me a couple of Twilight posters from a magazine! Cool, huh?

My Aunt Elsa from WA was visiting during Thanksgiving, but I didn't have a chance to even visit with her! While she was in town, I had a couple of bleeds, so I didn't want to move off the couch! Mom was nice enough to bring her by for a few minutes while I was @ work, so we had a little time together! You can really tell how much paralysis I have in that photo - ugh! I asked Mandy, one of Dr. Yakes P.A.'s about the possibility of having anymore paralysis - she said there could be some, but there is also I might regain some feeling back depending on how the avm situation settles in the end. I can understand why people stare when I'm out in public, but I still wish they wouldn't!

Several co-workers had been sick and sure enough, by Friday afternoon I had picked up the bug! I immediately started taking antibiotics and Musinex and cough supppresant - I can't be hacking since that sometimes starts a bleed! I was looking forward to getting to CO, where I feel very well cared for! Arrived @ Swedish on Tues. - got admitted and settled in for the night! Had the chance to visit with so many of my favorite nurses! Some came by to say hello when they saw my name on the schedule - Judy, Laura, Jill (my Twilight buddy), Elizabeth, Burgen, Becky, Jack and even Alex (a/k/a, Jacob Black!) a recent tech hire! Can't forget Nicole, Kurt and Dave and Zufon! Got a photo with Victoria - she is so down to earth and always prays for me! Very enthusiastic and has told Celia she has seen patients w/worse avms completely recover, so she knows I'll be fine! I tell you, Kim Kardashian has nothing on me when I'm @ Swedish, I'm quite the popular patient! Even have the papparazzi hounding me! That's what the guy transporting me to OR called Celia as she was shooting photos of me with her camera for my blog!

Dr. Yakes used 15 cc's of alcohol this time - it doesn't sound like a lot, but I had so much swelling! My left eye was completely closed and the area under my chin was very swollen too!

I was admitted under Dr. Pinsinski's name, since Dr. Yakes was leaving the country right after my procedure. Heading to Telaviv and Cairo I believe! He won't be back for a while, so I had to wait an extra 2 weeks later than my usual appt. time for my next procedure! Going back to Dr. Pinsinski - he has an awesome bedside manner and we have a good rapport! Turns out his first career choice had been to be an Astronaut, so he was pretty psyched to find out Celia's brother-in-law is Astronaut Mike Fossum! Gotta hook up Dr. Pinsinski w/some space stuff when we return in January!

I am very happy with how the entire procedure went this time! No problems or set backs! I was anxious to get home to my furry kids and to be home with Mark!

As always, my sister is very generous and treated me to a new phone case @ the Denver airport from Anthony! I had purchased a phone cover from him before (it broke @ Celia's on Thanksgiving when I dropped it) and he remembered me and said he had checked out my blog! So here's Anthony! I ended up getting a fuschia blinged out phone cover and Celia got a light pink blinged out one! We had plenty of time to visit as Celia spent time with me in the hospital as she worked on some needlepoint! I had a couple of books on my Nook to read, so between that and the great staff @ Swedish, I had a very good experience! Would you believe the hospital food is great too? Every night for dinner I had the salmon with pinne pasta w/alfredo sauce and cheescake! Yum! Actually, soon as we picked up the car rental on arrival to Denver, we headed to Sams Dinner (that has been featured in "Diners, Drive-ins and Dives") for some down home cooking! Had some delicious meatloaf, mashed potatoes with gravy and veggies!

Guess I'll wrap up this entry! Speaking of wrapping, is everyone ready for the holidays? I'd like to send out some cards, but we'll see how far I get on that! For now, I'm taking it slow as I recover from this procedure. Back to work today and loving it! Take care everyone, and as always, thank you for all your love and support! Mark and I couldn't do it without you!

Cyndi

P.S. Had turned in for the night when I felt a trickle of fluid coming out of my mouth. Sure enough - had a minior bleed. Just had to get up and rinse my mouth out - didn't even pack it w/gauze! Whew!

P.P.S. Got a couple more photos from Celia, so wanted to add these on! I'm glad she took the pix of me right after getting to the room and sent it to Mark. Right away he told her I shouldn't have that purple tube on my trache. I kept feeling the area, looking to cover the opening in order to be able to speak, but of course being out of it, I wasn't able to figure out what the heck was around my neck! I didn't have my usual anesthesiologist (Wendy or Quinn), so I hadn't gone over what I expect to wake up to w/the anesthesiologist that was on duty. No biggie - just happy I didn't struggle or feel like I had to sit up right away. Which I probably actually did - Dr. Yakes does an angiogram each time to "see" what's going on and this is the first time I have a lot of really dark purple bruising in the groin area from the angiogram. Not painful or dangerous, so no problem. The other photo is just me having fun w/the dry eraser board!
Oh! Found out too that doc won't be going out of the country after all, so I'll get to see him in 5 weeks as I have been doing, instead of having to wait the extra few weeks putting me almost @ the end of January - which was kinda scary, since I always tend to have problems right before my scheduled embolization. Whew!